I think, in some ways, the Lemmy autistic community is the most reasonable and balanced-perspective collective of ASD folks that I’ve found online so far. It might be the only one that I can really say I’ve found in my own experience.

Other spaces seem to get overtaken by obsession and negativity to an unhealthy degree. Which, of course, I understand but sad to see it drown out positive posts all-too-often. It’s odd, because I figured it would require a lot of active moderating to achieve what we seem to have here.

Anyway, to the post topic.

I lived a life as a thoroughly miserable autistic person until I was 33, I’m 43 now. Once driven by a envious, misanthropic, self-toxic ego that was desperate to protect itself from pain and shame; I can understand how deeply entrenched your personality can become affected by negative patterns and to start from a position of very little effective supports. I now consider myself to be a pretty optimistic and resilient person. Context to understand my follwing thoughts.

What I need to live a good life:

  1. I need to take responsibility for changing what I can within myself

This is really fundamental, and pretty difficult depending on what your starting mindset is. It’s true that a lot of the conditional aspects of life that give me difficulty are not my fault, but focusing on that to any significant degree will make it a barrier to self-change. In the simplest sense, blame of any kind is a blocker to taking responsibility and when my thoughts and words tell a story of blame (whether towards myself, others, the world) then I try to figure out how to use that story as a prompt to act responsibly.

  1. I need one person who understands me and believes in me

A person. More would be nice, maybe, but one is all I need. I realize that’s still a pretty big hurdle given that practically all of us are living isolated kinds of realities, but its a numbers game. Do the work to meet other neurodivergent people in a way that might allow for a connection, expect nearly all of those interactions may be misses anyway. It doesn’t have to be neurodivergent people, but from my perspective it’s gonna save a lot of time. I never thought there was anyone in the world who was like me, part of what drove my misery, and finding someone similar and supportive helped me do difficult self-work and helped pick me up whenever failures and setbacks happened. A good fit in therapy can help here too, but thats its own journey to find the right person.

  1. I need to understand my specific autistic needs and limitations

I started my self-work from the position of being undiagnosed. I didn’t really even begin to consider the possibility that I was autistic until the COVID pandemic, and I eventually got assessed in 2022. The pandemic really opened my eyes because all of the social changes that came about in society (lockdown, physical distancing, wearing masks, etc) came as a massive relief to my day-to-day instead as a painful imposition to endure. That offered me a lot of clues to investigate and led me to understand how my social and environmental needs are very different from the norm, effectivley matching the autistic template. Really, for the first time I could believe there was a framework and others out there with a shared kind of experience where understanding myself could be achieved. I think this is ongoing work for me, to understand myself and others like me, especially because I lived so much of my life trying to fit the neurotypical culture and behaviour template. When you don’t know you’re autistic, there’s a high risk of trying to mask as neurotypical beyond your capacity to do so. The burnout from that can be catastrophic and life-changing, but luckily I was able to draw upon items #1 and #2 from this list to heal and remake myself into a healthy person instead of it driving me the other way into (probably) my own end.

  1. I need to accept that I am autistic

Again, fighting my societal programming here. I expect myself to easily be able to do a lot of things that are commonly in reach for most people but the list of things that I forgive myself for is growing. That doesn’t mean I abdicate my responsibilty to try or to work on those things, but understanding that there is a different path, a different level of support required, and a different definition of success for those things lets me take responsibility for them. It also helps me do the work of forgiveness more broadly. I forgive myself for the things that are totally out of my control, forgive others for their misjudgements and unfair expectaions, forgive myself for when I feel the old feelings again that once held me back.

  1. I need to behave according to my actual values and needs

Figuring out what these are and putting them into practice is what taking responsibility looks like. Keeping a reflective and honest eye on myself to ensure that I’m not falling into the complacency of self-delusion that this kind of work should ever end. It’s easy to do that. To make significant milestone accomplishments that lead you to rest for too long, satisfied that becoming a relatively better person than you were is enough to carry you forwards indefinitely. No, I’ve learned that leads to a backslide. To be a better person, you must resist the idea that you are one and always work to become one… whatever that may look like, in all areas of life.

To wrap up this post…

Okay, so thats my thoughts on what I need for a good life. Of course there are specific actions that I take to make this a reality. Those actions are evidence of me taking responsibility and fulfilling my values and needs and, if you are starting from a place of negative blackhole self-esteem, doing so can bring you a healthy self and way of being in a world that seems to naturally discourage that for you.

I hope you are having a good day today.

  • schipelblorp@sh.itjust.works
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    8 days ago

    I need fucking money. So many autistic people, even with educations, are unemployed or underemployed.

    Sorry if you find my impending homelessness negative. Good luck in forming a club of winners of the autistic lottery, people’s whose autism & interests makes them worthwhile employees.

    • winkerjadams@lemmy.dbzer0.com
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      8 days ago

      Working overnight has solved a lot of my issues with working. Little to no people to bother you, enough work to stay busy until the shift is over, can listen to my music and ignore people when it’s not work relevant

      • schipelblorp@sh.itjust.works
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        8 days ago

        Security guard?

        Honestly, I hate second and third shift since i cannot relax at all before a work shift. I like to do it first thing, then I can relax when I get home. If the sun wasn’t an issue, it’d be fine, but I’m sure i’d get slammed with depression trying a night shift.

        • NihilsineNefas@slrpnk.net
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          7 days ago

          If you can handle the early morning shifts (6am to 3pm most often) then warehouse work is a strong contender for decent ND work.

          If you’re aware of safe lifting and manual handling, and have the type of tism that lets you do repetitive manual tasks after a bit of practice, then working in the shipping and receiving section of a warehouse becomes a gym that you get paid for.

          Not to mention how much higher the chances of finding other ND people to become friends with is, when working in a warehouse.

          It’s not a capital C career, but it pays well enough to keep the lights on, and if you push for it, they might even put you on a forklift course (skills mean bills)

          I really hope the situation improves for you in the short and long term though.

    • TerdFerguson@lemmy.caOP
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      8 days ago

      Yeah, and I expect some responses like this. I’m sorry you’re having a tough time, financially. I expect to be out of work very soon due to circumstances beyond my control and to be similarly finding myself threatened with the difficulties that go with that (once again, unfortunately).

      None of what I’m suggesting requires money and can lighten your overall load in life as an autistic person.

      • schipelblorp@sh.itjust.works
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        8 days ago

        Yes, I understand.

        Outside of employment, I’m actually better than I ever have been. I used to have a bipolar diagnosis and disability. Realizing what was really going on and flipping the double-bird to the mental health industry that had exclusively caused harm was very freeing.

        I’d be pretty happy with my life and my apartment and my dog and my activities, but I am continually haunted by work being hell, and it’s hard to feel good about myself when I’m actively treated as less than I am by society when I am forced to interact with it at work, when the entirety of my life is consumed by a question that seemingly has no answer.

        So all I really need is money.

        • TerdFerguson@lemmy.caOP
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          8 days ago

          Yeah. Totally get it. I’m tring to work out how to self-actualize income to get out of this cycle of temporary tolerance I recieve in the work place(s)… and I’m feeling really overwhelmed by all that. On the other hand, I feel like the minimizing expenses is going pretty good so that will help a tiny bit.

          I came to autism by way of misdiagnosed bipolar as well; it is a very common and well-documented pipeline from what I’ve learned (Tony Atwood, The Complete Guide to Asperger’s Syndrome). Feels good to cast off that improrper label and the awful medication that goes with it. Figuring out how to be an autistic person let me get away from all that.

          • schipelblorp@sh.itjust.works
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            8 days ago

            You’re probably smarter than I was. It took me close to 20 years to realize that the drugs weren’t doing anything to help, and when my psychiatrist agreed they weren’t working and they were not working so much, she thought I should do a trial of ECT. When I asked her, well, if they’re not working, I should go off them, right? She said, no, of course not!

            What’s your story?

            • TerdFerguson@lemmy.caOP
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              8 days ago

              I was on lithum for 10 years before it started harming my kidneys to the point where I needed to come off it. I think that it did have some benefits when I was otherwise in an extreme bad mental health, but only in the sense that it muted the extreme emotions I might feel.

              I originally went seeking help in my early twenties for what I now understand to be autistic meltdowns. When I would lose it, the consequences were devastating and I could not seem to figure out how to protect myself from them happening or from the blowback.

              Psychiatry started by validating the suspected BPD as not exactly fitting type 1 or 2… “Not-otherwise Specified” was the category I was given. When my pdoc left, the new one disqualified BPD and suggested “Generalized Anxiety with episodes of Acute Extreme Anxiety”, I stuck with him until he retired. He eventually accepted my independently-sought assessment to ASD, as it was a much better fit for my life circumstances and also accounted for the challenges that I was seeing him for. He admitted he lacked the knowledge or background to qualify that himself or suggest it.

              The medical system did not lead me where I needed to go, so I am glad that I did more on my own to get to where I am. Sorry to hear that your psychiatrist sucks.

              • schipelblorp@sh.itjust.works
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                8 days ago

                Symptom management, classic psychiatry. That must have been a while ago, because these days there’s a lot more drugs they could have put you on.

                I also relate to anxiety pretty heavily as a diagnosis, it’s one of the things I was a bit surprised was never really addressed or treated, but in the context of autism, it’s clear where the anxiety came from.

                I think it’s pretty clear that the medical model of treatment can be a very serious trap for autistic people.

                • TerdFerguson@lemmy.caOP
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                  8 days ago

                  Well put. Yeah, it’s really full of holes, wrong-turns and dead-ends.

                  There was a carosel of other meds involved, especially after lithium. I had to self-drive my way off that ride, supported by my pdoc once he accepted the results of my ASD assesment and diagnosis.

                  Once I learned to operate well enough as autistic, I stopped needing treatment for the underlying issues that suggested they were appropriate meds.